The Dance of the CVI Mom at an IEP (Could I put more initials in a title? A-OK!)

Over the past 11 years, and in no less than 5 different states, I have attended countless Individualized Family Support Plans (IFSPs) and Individualized Education Plans (IEPs). (Quite the fun fact about me. May make a great t-shirt.)

In every single one of these meetings, I have introduced the conversation about Cortical Visual Impairment and how it affects my daughter’s ability to learn. I introduced it. The mom.

I need to be clear that I have not yet been successful in getting her an educational environment that fits her unique learning needs, and, especially, her CVI. Believe me, I’ve tried. I’m still trying and I will share our efforts in future posts.

We are going into 6th grade now. The frustration and despair I feel, when I let myself think about how much time we have lost, is overwhelming.

Being overwhelmed is not going to change anything for her. Being overwhelmed is not going to improve the current state of education for children with CVI.

So, I have to do something different. I have to call it what it is: Schools are not prepared to teach children with CVI. I have to do something.

If moms do anything, we persevere, right? We ask a question on Facebook, or call yet another doctor, or get the latest book, or even, start a blog. Whatever it takes.

Sometimes it takes curling up in a fetal position in your closet for 3 days. Ahem. So I’m told.

My point is that I have always had to put CVI on the educational team’s radar. It doesn’t matter which state I’m living in. I have to bring it up. And, then, inevitably, I have to sit back and watch as I am assured by the Teacher of the Visually Impaired and her administrator that they have “got this.” “Not to worry.”

I know this is not the case because I am aware of the national shortage of Teachers of the Visually Impaired. I am also aware of the national shortage of TVI, teachers, and therapists with any expertise in CVI. I’ve been asking where the experts are for a decade now. We don’t have enough of them.

In our IEP, I will ask, “Do you have the CVI Range Endorsement through Perkins School for the Blind?”

I am met with blank stares. Crickets. Tumbleweeds.

Someone may say, “I took a workshop with Dr. Roman a few years back.” Or, “I saw Diane Sheline speak once.”

These are great beginnings to an understanding of working with children with CVI. Beginnings.

And then, in the IEP meeting, I begin the intricate dance of the mother of a kid with CVI. It goes a little something like this:

(Deep breath, remember to smile! Bring bagels. It’s show time!)

I ask what services are available and introduce what she needs according to the CVI Range and her present levels of progress (yes, the unfortunate acronym – PLOP),

(Maintain eye contact, keep smiling, shuffle, shuffle, hop step),

Explain – politely- but, through clenched teeth (The show must go on!) because I can’t believe I’m explaining why vision is important for learning

(Twirl, jazz hands, sunset arms),

AGAIN!

I hand out the dozens of pages of resources on CVI I printed out, stapled and highlighted the night before for the teacher, the TVI, the principal, the therapists, the administrator, the AAC lady, the baker, and the candlestick maker

(one, two, three, one, two, three, cha-cha-cha, frantic tap solo)

TA DA! (Big flourish! We are all on the same page! It’s a new year! Cartwheels, sparklers…Go TEAM!)

E may be allotted 30 minutes/week.

If I push,

45 minutes/week of “vision time.”

“Vision time” as direct consultation, that is direct time between the Teacher of the Visually Impaired with my girl.

(Insert “WAH-WAH” noise here.)

And time continues to pass.

Another school year, another struggle to reach her, another group of people to convince that she can learn if she has access to her environment. If they believe in her.

This blog is so exciting for me, not just because it is touching or inspirational, but because, as a career special educator and teacher of the visually impaired, I know that change within the service delivery system comes from parents. I can shout from the rooftop, and am not heard. Historically it has always been parents that brought about change. Parents were behind IDEA, behind all the changes in service delivery for autism, and the list goes on…Not that you as parents need one more responsibility, but unfortunately that is where the power is in special education. I say, dance on…and let us know how professionals can support the prom.

I get it, Mom. As a TVI I sit in ARD meetings realizing how much information is being thrown at a parent and see that look of desperation begin to cross their face. I am a TVI with The CVI Range Endorsement and am fortunate to have a team around me who want to speak out about CVI and practice our knowledge in the classroom with a child with CVI. I sat in an ARD yesterday with a parent who has turned her house into a CVI dream house for her son. I spoke with her at great length prior to the meeting to review my assessment and assure her we are addressing her son’s CVI.He is also medically fragile. Everything was going well until they informed her the private nurse could not attend school with him. The administrator knew this was a concern before thw meeting for the parent yet blatantly said in the ARD “Nope, she can’t come (while smacking her gum). The parent deflated..literally. She has to send her 3 yr. old son to school by himself and no one prepped her for this. I understand the rule for not allowing non-district personnel in the classroom but they should have dealt with before sitting in a room full of people. They knew the subject would come up! This is the kind of behavior that forces me to think “Do I want to stay and fight these battles any longer?” while the other part of me says ” You have to do more!”
Sorry for the ramble but I continue to be passionate about my students and the families. Of course I will stay and fight. The other choice is not an option.
Deborah Bruening,
Teacher for the Visually Impaired, CVI Specialist

As a teacher, I somewhat feel your struggle -except it’s me zipping from classroom to classroom pointing out kids who exhibit CVI characteristics and give (maybe unwanted) tips and strategies. Because people don’t wven know it’s a thing, and a thing that can be addressed!

Thank you for your amazing blog! It definitely speaks to me. My son just started 5th grade. We are finally seeing some worthwhile adaptations as the school district moves towards newer technologies. We are fortunate that he receives 180 minutes per week with his TVI. But the complete re-educating the team each year is grueling!! Keep up the great writing – you have a gift in this area!